Bonnie over at The Fragile X Files shared an article from the Seattle Times, The mining of rare diseases, and her thoughts about it. I have so many thoughts right now that I am having trouble teasing them apart. I guess I can start here, with this from her blog post:
But we, the . . . → Read More: Fragile X and fragile hope.
Since losing the STX209 we’ve lost a lot. We’ve lost the ability to spontaneously change our plans for the day, we’ve lost the ability to take Caleb to large gatherings, we’ve lost the ability to take Caleb confidently out into public period. His anxiety is…I have no words for it.
What kills me is . . . → Read More: What we haven’t lost.
Eric isn’t going to be thrilled with this one.
Since Caleb was born we have been a united team. We don’t always see eye to eye but we’ve never strongly disagreed about how to respond to any situations concerning Caleb. Mostly he leaves it to me to research whatever issue we need to tackle . . . → Read More: Broken and stressed…
Have you ever read, “Flowers for Algernon?” I remember reading it in middle school.
“The story is told through a series of journal entries written by the story’s protagonist, Charlie Gordon, a man with an IQ of 68 who works a menial job as a janitor in a factory. He is selected to undergo . . . → Read More: Balancing hope.
Every day, he makes me laugh. A dozen times a day he says something to make me laugh and I think…I don’t want to forget this, I should blog this. Yet, I’m too busy soaking up his awesomeness…filling up my tank…just in case. Just in case…
We haven’t started titrating down yet. We may . . . → Read More: Every day…
It turns out the whole world hasn’t been hanging on my every word! Who knew? What follows is a short version of how we got to where we are at the moment…
On May 15, 2013 Seaside Therapeutics, Inc., the sponsor of a drug trial my 9 year old son Caleb is participating in, . . . → Read More: How did we get here? (A short-ish summary.)
This last week has been the most painful of my life. We began with the ending of the STX209 trial, worsened with the news that Grampy (Eric’s grandfather, who lives downstairs) had broken two vertebra in his back during a fall…a fall he took when we were visiting Eric’s mother, who is recovering . . . → Read More: And now…now I am angry.
If you were me, if you had this most amazing child…this sweet, funny child…this handsome, clever child…what would you do to keep him whole? What would you do to save his voice, his sly sense of humor, his joyous personality? Would you sit quietly while pieces of him slipped away from you? Would you . . . → Read More: What would you do?